There is no higher priority for any brain injury community reintegrative program then to aid the members of our community who are the neediest and the most cognitively challenged. The bottom line is that tbi programs should help people with brain injuries fill out and follow through on basic-necessity-and-service-related paperwork if they are unable to accomplish that on their own.
On behalf of the Brain Injury Network, a brain injury nonprofit advocacy organization that serves individuals with acquired brain injuries, I am pleased to submit the following written testimony to the DOR’s June 30, 2014 hearing regarding the issue of traumatic brain injury (TBI) and on the particular topic of TBI program criteria prioritization. Thank you for holding the hearing. Thank you also for calling attention to the issue of traumatic brain injury in California.
Priorities for Community Reintegrative Programming for Individuals with Acquired Brain Injuries (which includes Traumatic Brain Injuries)
After a brain injury many individuals cannot easily participate in society. They need community supports. They need training. They need professional and peer support. Community reintegrative programs are there as a means whereby individuals with brain injuries can learn how to reassert themselves into the mainstream of society.
However, many individuals with acquired brain injuries are unable to attend to the most basic day-to-day tasks let alone carrying through with training programs, classes, meetings, and the like. Therefore the first priority of any program staffers must be to assess the particular needs of any person with a brain injury, and if that person is in jeopardy, the next thing any program staffer should do is to stabilize the living situation of the person with the brain injury. That individual must be afforded access to food, shelter, basic medical care and any benefit system that will help the brain injury survivor get through his or her time of need. Therefore, the staffer should help the person enlist in any and all local, nonprofit, or government programs that might be of assistance.
It is important to note at this point that this rationale has to do with the fact that this discussion involves people who are intellectually or cognitively incapacitated and who cannot work due to the brain injury and perhaps additional physical, psychological, and sensory issues. Many people with brain injuries have difficulty with executive tasks. They cannot negotiate the system. Many cannot process or follow through on directions. They may be unable to read, write, or fully comprehend what they read or hear. They may not properly form, retain, or retrieve memories. Some cannot tolerate external stimuli such as exposure to crowds, movement, noise, or bright light. Some have impaired judgment and emotional control issues. Some can no longer do basic math or balance a checkbook. There are many possible acquired brain injury disorder conditions which mean that people may need special or extensive supports to reintegrate into the community.
But, unfortunately, when it comes to community reintegration there is a missing link in the current state of affairs. Prior to the reintegration phase there is the acute medical treatment stage wherein the medical community will stabilize the patient medically. Then there may or may not be subacute or home care and treatment. But the next step is the critical step that is often ignored. And that is the step to see to it that the person with the brain injury is in a safe place and able to slowly heal with the help of community supports. There are community supports out there but as previously indicated many survivors of brain injury are unable to follow through on access to these supports. If they have no family or friends to help them access available services they may fall through the cracks altogether.
If an individual with a brain injury makes contact with or appears at a brain injury community reintegration program and is seeking help but is too cognitively challenged to follow through on his or her own with whatever help or counseling that is offered, it is at this point that any community-based program that operates a brain injury program must intercede and provide immediate assistance.
Here are some examples:
1) The program must have any useful support program paperwork available onsite. A staff person must help or, if necessary, completely fill out the forms with the survivor. The program should turn in the paperwork to the appropriate agency for the survivor. The program staff must follow through after this step. The staffer must be willing to go to a meeting with the survivor at another agency if a face-to-face meeting at the other agency with the individual applying for services is required.
2) If the individual with cognitive challenges has low income or will soon enough because he cannot work, the staff person should be willing to help that person fill out paperwork for the following programs: Social Security Disability Insurance benefits (SSDI), Supplemental Security Income benefits (SSI), county in-home care services, discounted home and cell phone services (California LifeLine), the discounted utilities program (CARE), the supplemental nutrition assistance program (SNAP), and the housing choice voucher program. There may be other aid programs available. This list is by no means exhaustive.
3) If someone calls in and has no means to get to the community program because he or she has no transport, the staffer should attempt to help that person get onto the paratransit system in order that that person can go out into the community, including going to the program’s day classes or support meetings.
4) If the person is calling from a payphone and is living in his car, or if the individual calls to say he is being evicted from his or her home, it is the duty of the staffer to see to it that the individual gets to a local homeless shelter. Therefore, the staffer must have information regarding all local shelter locations. And the staffer should convey this information to the individual in need.
5) If the person doesn’t have enough to eat the staffer should provide a list of all of the food banks and other sources of food for the needy that are in the area.
6) If the individual is unable to handle money, the brain injury service provider agency should arrange for representative payee services for the client. If there aren’t any low-cost representative payee services available in the area, the brain injury agency should take on that duty.
7) The staffer should ascertain the medical supports the individual has, encourage the individual to seek basic medical interventions (such as connecting with a physician or taking a physical), and provide information about free and low income medical clinics that are available in the area. The staff should also have on hand a list of any doctors, neuropsychologists, medical therapists, and hospitals in the area that accept Medi-Cal (California’s Medicaid program) patients.
Offering much more extensive services and supports as indicated above is the only way that certain people, who are basically completely alone and cognitively incapacitated, are going to get to the stability necessary for them to subsequently attend cognitive or vocational retraining classes, support meetings, and the like.
These types of services and supports are desperately needed by many individuals in the brain injury community. Any agency that has government brain-injury-specific funding that merely offers conferences, seminars, and training sessions for providers; rudimentary counseling, classes and support meetings for survivors; or brain injury awareness campaigns is not doing sufficient work on behalf of the brain injury survivor community.
The community programs should not just be there for the survivors who can get to meetings or classes on their own or with the help of family. The programs need to be there for every individual with an acquired brain injury who requests or requires basic human safety net interventions in addition to brain injury community reintegrative programming.
If the person with the acquired brain injury is unable to read, write, understand, or follow through on basic food and shelter or benefits paperwork then it is the duty of the DOR-funded program to allocate a staffer to sit with the individual and help him or her prepare the paperwork. The program staffer must help the client with any required paperwork that is necessary for that individual to access community supports.
Written Statement to the California Department of Rehabilitation (DOR) Statement of Susan C. Hultberg, MA, JD Public Hearing Entitled: Traumatic Brain Injury Services Stakeholder Meeting of October 24, 2013 http://www.braininjurynetwork.org/dorcatbi.html Retrieved June 27, 2014
Susan C. Hultberg President and Executive Director of the Brain Injury Network Author: Brain Injury Advocates (2012) Author: Traumatic Brain Injury Rehabilitation and Compensation: Survivors' Perspectives (1996)